So I was suppose to start my job the second week of September. And I did. For two days.

On my second day, my mobile rang. I was home, as I work 10 – 2 five days a week. And it was around 330 when my phone rang with the name of my company on the display.

I admit, I panicked. Why were they calling so long after the end of my day and on my mobile? It’s my private mobile, so the only people who have it are HR, recruitment, my bosses etc. So I answered it.

It was the Head of HR. And a solicitor. It seemed that I was wrong about it being okay that my Indefinitely Leave To Remain (IDLR) visa was in an expired passport. Well, half wrong. It was fine to travel on it that way. It no longer gave me the right to work. It had to be moved to a Biometric Residency Permit (BRP) and until that happened? I was fired.

I had an email from my boss mere minutes after that phone call ended telling me she would keep my job open. She wanted me for it and no one else. So get it sorted and come back to work as soon as possible.

I, of course, spent a few minutes crying and kicking myself. I used to check the IDLR rules regularly! Why had I stopped? When had I stopped?

No clue.

Simon and I had a small amount of money set aside for something else but agreed using it for this was bettter. So I started to get organised to get my visa moved and looked into doing an ‘emergency’ application.

Remember how this was the second week in September? The first ‘emergency’ appointment available at any Home Office Visa office was 29th October. In fucking Liverpool.

I thought for sure that had to be an error. Surely there was some sort of problem with their online system!

So I rang.

Nope. No problem. That really was the first available appointment.

So Simon and I talked about it and I did some more research, which was telling me that people were getting their moved visas in just weeks. Not the six months the Home Office claims it can take.

So I got my stuff together and sent it in. That was around the 3rd week of September.

And I waited.

And then I panicked again. The rules about IDLRs had changed in 2012. I had been working for myself this whole time. Had I been breaking the law?!?!

So I found an immigration lawyer and gave them a ring.

I had not. In fact, by law, I didn’t actually have to wait to go back to work until the IDLR was moved. Having the IDLR, no matter what document it was in, gave me the legal right to work in the UK. But the lawyer wasn’t surprised my company didn’t want to take the chance, considering the fines start at £10,000.

So I kept waiting. And I got a text saying they had the information. And then another text saying it had been given to a case worker to review and I’d be contacted if they needed any other information.

What? Why did it need to be approved again?!?!

Because it was still in my name of origin. And to change it to my chosen name, I had to prove I had lived in the UK for the whole 15 years that I claimed.

Well, fuck.

So then I waited some more.

And then I got an email. Did I have any proof that I had lived in the UK from 2009 until 2017?

And I replied, um, I sent you all of the passports I have.

And she replied, no. You didn’t. There’s a gap.

And I hit my head on my desk and remembered that I had gotten a new US passport around the time Adam was born so our passport surnames would match. That’s a US government requirement, by the way. Not sure what they do about parents who have a different last name from their kids, as happens in this world, but for me it was easy fix nine years ago when we registered Adam’s birth with the US consulate and got his US passport and social security number.

So I replied again, I can overnight you my passport or can I just email you my tax returns for that time period?

And she replied that tax returns would be great and that I should have an answer in a few days.

And a few days later I did indeed have an answer. And my BRP arrived a few days later.

Ta da!

And I went back to work 3rd December.

So all in all? Not paying the urgent price (plus flight and hotel) meant I only waited about a week past how long it would have taken had I paid and gone to Liverpool.

And my theory as to why there are no emergency appointments for weeks?

Brexit.

Which doesn’t even affect me personally in terms of immigration as I’m not an EU national. Of course it affects me personally in all the ways it will affect all of us in the UK. But not for immigration.

So I’m now legal again, until my BRP expires in five years. But I won’t be fired this time. There’s a grace period to get it sorted once you have one and need another one.

And I have a permanent reminder in my diary to check the IDLR rules every six months.

Like this:

And like a switch being flipped my occasional bout of feeling slightly warm has turned into hot flashes so hot I swear I’m on fire. So far my sleeping meds have prevented these horrible things waking me up, but I am expecting to have that happen any day.

So I went to my GP’s office and chatted to one of my favourite GP’s, Dr Mc, about what I could do, since I can’t take hormones, as they give me migraines. And he actually suggested natural remedies. He admitted that he had no idea if they actually worked or if it was all placebo effect, but we agreed even if it’s just placebo effect, anything is better than feeling like you’re on fire!

So one night this week after work I am going to go to Harland and Barrett and see what they have for “Menopause Vitamins.”

Like this:

As I mentioned previously, I applied for Personal Independant Payment in 2017 and took it all the way to appeal.

And I lost. By one point. I am one point not quite ill enough to receive themoney the government claims I’m entitled to.

Except I’m not entitled to it. Not any more.

And everyone keeps telling met to reapply. That finding that one point, by starting from the beginning, shouldn’t be too hard.

But, for right now, the government has won. I don’t have the energy to start all over again.

And that’s what they are counting on, really. That they’ll wear down those of us who, according to them, are ‘fine’, so we’ll give up. Go back to work and not try again.

So I am, currently back at work, part time.

And I’m exhausted and in pain. Like always.

But I’ve also been thinking about why I actually didn’t win my appeal.

Because I don’t think it’s because I didn’t have enough evidence as to why I get anxious when I go some place new (the point I was trying very hard to get).

I think it’s actually because the appeal committee, who I met in person, saw the Robyn who covers her pain. And her exhaustion.

Because that’s what a lot of us with invisible illnesses do. We cover. We put forth a facade of being normal. Of not hurting. Of being fine.

It’s not that we’re faking sick. We’re faking well.

And it can be hard to turn that off. To show how we really feel.

How every step hurts. How our words get jumbled. How tired we actually are.

I am so used to letting no one, not even my family, see how bad I really feel, that it’s hard to drop the act and let it show.

And why do I keep up the act? Because I have to. No matter how I feel, I have to get up and get Adam ready for school, and now me ready for work. I have to make lunches and help him with his uniform (Yes, even at his age. He’s still autistic, after all, and still has issues with fine motor control.) and wait for his bus with him.

Sure, Simon helps as much as he can. But he leaves the house over an hour before we do, to make it out to his campus for his first class. That might ease up a bit if Ulster ever actually moves to Belfast. (Perhaps a post for another day…)

So, as it always has, it falls on me. Except now, after Adam is on his bus, I’m on mine, off to work.

And I love my job. I really do. It’s the Administrative job I’ve always wanted in terms of autonomy, power, and the back up to use it.

But it takes it’s toll. Even if I do not have a physical day at work, I still end the day exhausted. And some days have to be physical as there is a lot of cleaning up and organising my poorly neglected office needs.

So I spread that work out and make sure I have whole days of just sitting at my desk doing other things.

But even on those days I do 5,000 steps without even trying. Just from walking around the office.

It will become somewhat easier in a few months when we buy a car, because I won’t need to do any of the walking I do now to get to work. It’s not much, but what it is takes some of my energy. Not that driving isn’t tiring, but I don’t find it tiring in the same way.

But what I really want is to not have to wear the facade, ever.

But I have to.

Because my kind of illness? The invisible kind? Is still not believed by a whole lotta people.

So if I grimace in pain, or don’t laugh off my word confusions or give in to the exhaustion as often as I truly want to, then people would think I was faking. Pretending to be ill.

Like this:

I was reading a really really good fan fiction series recently. It was Rafael Barba/Sonny Carisi from Law & Order Special Victims Unit. I can link to it if there’s any interest. It’s on AO3.

Anyway, along with being really well written, it had a fantastic timeline. It started with Sonny and Rafi as friends. The first story ends with them dating and admitting how they feel about it each other.

And then it jumps ahead. A year. Eighteen months. Three years. Five and a half years.

And I realised how realistic that is. I mean, sure, some of the inbetween stuff might have been nice to see. Their day to day lives together. Cases worked together and the like.

But the truth is, day to day life isn’t all that interesting. Even if you’re a cop and an ADA.

In real life you don’t ponder every day. You just live it. You meet your mate, live together, maybe marry and start a family. And you don’t really think about the years going by.

Simon and I have been married for 15 years this coming September. Together for 18 years at the end of the year.

And I certainly can’t remember every day. I remember big things. Our first real life meeting. When he asked me to marry him. Our wedding. The day we found out I was pregnant. Our son’s birth. Buying our house.

And some little things. Like the time my sister in law thrust my baby niece into his arms so she could pee and I found him there sort of staring at the baby in his arms, totally perplexed.

Or the time my sister did the same thing with my baby nephew and when she took him back, Simon had left red marks on his legs, he was holding on so tight.

But otherwise, years go by with nothing of note. We do things, of course, but every day things. We go to work and take care of our son and do things around the house and visit people and watch TV. Play games.

And, always, at the base of it is the fact that today is like tomorrow and the next day because we will be together until death do us part.

Like this:

Lots has, of course, happened. We bought a house. I have a job. I fought for PIP and lost on appeal. By one point.

We have two cats who are just over a year old.

Princess EllaJack the Clown

Adam is only about 10 inches shorter than me and will be 10 in June.

Simon is still a foot taller than me and will be 45 in March.

I am still as short as ever and will be 50 on 5th February.

Simon and I will be married 15 years in September and together 18 in December.

As always seems to happen with me, the busier I get, the more things I think to do.

Of course, my fibro and arthritis and other joint issues means I can’t do things as much as I’d like to. In fact I had the worst flare ever a week or two ago when I, literally, couldn’t move without moaning in pain. Luckily it was on a Saturday and I was find by Monday morning for work. But, I have to admit, it scared me. It still scares me.

But I’ve had lots of blog posts floating in my head. And about five stuck in my drafts folder.

One about relationships that last. And one about coming out nearly 30 years ago. One about my new job and how much I love it.

And one about the hell that was the fuck up with my Indefinite Leave To Remain visa that postponed my job by two months.

I guess I just feel like writing, is all.

So I hope some people are still around to read this thing. Perhaps the email notification will pop up and you’ll be all ‘who?’.

But maybe, just maybe, the notification will pop up and you’ll be all ‘Whaoo! I missed her!’

Finally, I am still knitting and crocheting (sort of) and quilling and doing tapestry and weaving and all that other fibre I do. And I am hoping to open a shop right here on this site.

But I have just updated the privacy policy to align with GDPR (hey, I’m only 6 days late!). And some other bits and pieces, like the Welcome page and the About Me page, so I thought I’d pop over to here and give y’all a thrill.

Are you thrilled?

For the record, I keep almost no data on anyone. My digital data is kept by Conscious Crafties. Anything physical I have is under lock and key and I have the only key.

So your data is safe with me.

So what have I been doing?

Some of this. Some of that.

Some of the other.

I’ve been knitting and crocheting and turning 49 and planning Adam’s 9th and just general living.